Tuesday, November 24, 2009

Cysters and fiBros

Some times people wonder how it is that I can be so close to the CFers that hang out in the CF2 chat room when I've never met most of them. Well, I'll try to explain:

I love D with all my heart, and I hope he loves me just as much. B and N are my two bestest friends and I appreciate all that they do for me. They take me to or pick me up from doctor's appointments, take me grocery shopping, and do a million other little things that for a CFer are not little things (ever try to drag around a full basket of laundry with 55% lung function?). But the simple fact of the matter is that no matter how much I love these people or how close we are, they don't know how CF makes me feel. Emotionally, mentally, physically. And my Cysters and fiBros do. They know what I mean when I say I think I'm having an attack of pluerisy. When I say I feel tight they know what I'm talking about.

CF has to be one of the more brutal diseases out there. Not that things like cancer, ALS, and MS aren't horrible. But people with those diseases don't usually have to deal with it for their entire life! CF is always there, even if you are a late diagnosis you've typically had problems you're entire life, you just didn't know why. The average life expectancy for a CFer is about 37 years these days. So imagine 37 years of your body very slowly failing. Imagine how you feel when you have a chest cold, now imagine that you felt that way every day. And that's how I feel on a good day. When I'm sick breathing is hard work. I have to think about every breath I take.

My days are taken up with the things that most people do everyday (work, cleaning, cooking, running errands) but also with several hours of treatments. Inhaled medications, vest, percussor, coughing so hard I think I might pass out. Pills, handfuls of them. Insulin injections, blood sugar readings. There is not a room in my apartment free of medical perifanalia. Even my closets have supplies in them, and my fridge is stocked with meds that have to be kept cold.

My fellow CFers understand this life I lead. They understand what its like to try and have a normal social life in the midst of it all. And they get how hard it is to hold down a job, and what its like to fantasize about going on disability at the age of 28 (or younger in some cases). In the chat room no topic is sacred. On an almost daily basis you can see conversations that include the follow subjects: snot, puss, yeast, blood, mucus, and other bodily fluid, poop, medications, sex, rants about a dumb nurse or doctor, black humor, death, and many more. To not have to explain all the little details of my daily life is very refreshing.

So all of this is why I can be so close to them. Why I worry about them. And why I cry when one of them dies. Its really no different than any other support group, we just can't always meet face to face. I have a long list of CFers I would like to meet in "real life" and I know that some of them will probably die before that gets to happen. Some already have, some are very close to that now. Like Courtney. She has chosen to "go home to God" as she puts it. Courtney has been through more than anyone should ever have to in the last 6 months. She is tired of hurting, tired of being sick, tired of the hospital, and just plain tired. She is being made comfortable now, and that is a comfort to me. I don't want her final journey to be a painful one. I understand and respect her decision, and admire her for making this choice. It could not have been an easy one. But of course I will miss her.

So D, B, N, know that I love you all. But if I get frustrated at having to explain my CF life, or just don't tell you something at all, know that its not because I'm hiding anything, know that I'm just tired that day.

And everyone reading this, please say a prayer (or whatever your thing is) for Courtney to be at peace in her last few days, and for her family to be at peace with her decision (although I think they are). We are losing a Cyster, but gaining a Guardian.


Amy said...

very well said Cyster!!!!

Sometimes its so hard to explain the connection I feel with all of you. People just don't get it. But as much as it hurts when I loose one, having the support of someone who TRULY understands is well worth the losses we incur. So we my bawl when we loose one, but we rejoice when we find another friend online.

LOVE YOU!!!!!!!!!!!!!!!!!!

p.s. you are on my list ;) and your ass best not die first!!!! :P

Princess Jess said...

You're totally on my list too Amy! And I won't die if you won't die!